Sunday, February 8, 2015

April 30, 2015 | My Jottings

I have heard people speak about the kind of breathing that happens when a loved one is close to death, and the hospice nurse mentioned this to help prepare us also. What was described to me never happened, however Michael’s breathing was becoming so labored it was difficult to watch.

Hour after hour passed on Sunday and our hearts were breaking to see his body under such strain just to breathe. Michael’s body temperature began to rise as well. I never took his temperature, but by Sunday night his skin was burning up and I would not have been surprised had it been 105°-106°. I called the hospice nurse to ask about this, and also mentioned how hard his lungs and body were working to draw each breath. She told me that this all meant that Michael’s central nervous system was shutting down and was to be expected. She encouraged us to give him liquid morphine every 30-60 minutes now, to help ease his breathing. I told her I was hesitant about giving him so much — I didn’t want to give him an overdose. I know that might sound odd to some, but I wanted God to take Michael in His timing, and I didn’t ever want to wonder if I had given him too much. The nurse reassured me that with the dosage we were giving him, we weren’t even close to those levels, and every 30-60 minutes for his comfort was entirely reasonable. I was relieved.

Michael’s wonderful daughters Buffy and Daphne were there all day Sunday, as was his sister Patty and his oldest grandson Jordan. We did what we had done before — gathered quietly around him, tended to his needs and tried to keep him comfortable in every possible way, and told him how much we loved him and what a wonderful man he was. Sometimes a few of us would stay in the bedroom with Michael while the others took a break and went to the kitchen to have soup and bread; then they would come back to be with him while we took a break to eat. Once again I was so grateful to have a fridge full of food so everyone could be easily fed.

dphotoThis picture is of Daphne, Buffy and Patty, basically pouring their love out on Michael. I don’t think I’ve ever met someone with a more devoted sister and daughters. It was a joy and privilege to see.

The weather on Sunday was a little warmer than it had been earlier in the week, but by the time the sun began to set, we had some freezing rain coming down. Buffy, Daphne and Jordan all had several hours of very cautious driving ahead of them, and reluctantly left right after dark. They said their tearful goodbyes to Michael with so many hugs and tender kisses, and even though it was unspoken, we all knew the end was near, and this would be the last time these lovely young women would see their father alive.

Sara spent a long time with her dad, massaging him with essential oils and tending to him so lovingly. She gives just about the best massage I’ve ever had, so I know Michael was feeling her love come through her gentle touch.

IMG_1792

Mr. McBoy, Sharon and Chris’s oldest child and my oldest grandson, asked if he could spend the night to help take care of Grandpa. He’s only twelve, but he loved Michael deeply and wasn’t afraid of what he was seeing, so his parents agreed.

That night as we all got into our pajamas and prepared for the hours ahead, I started earnestly praying over and over for the Lord to take Michael soon. We couldn’t abide the thought of being without him, and we couldn’t stand the heartbreak of seeing him breathe so laboriously.

We set our alarms (in case we dropped off to sleep in our exhaustion) so that every hour on the hour, one of us got up to minister to Michael’s needs. I was sleeping 18 inches from him, Sharon was next to me, Sara was camped out on the carpeted floor, and Mr. McBoy was on the couch.

We had all thought that Michael would be taken home sometime on Sunday — it just seemed almost impossible that he could continue for much longer with such harrowing breathing, but as Sunday came to a close, it looked like Monday would be the day.

When I got up to care for Michael, each time I leaned down and kissed him, stroked his face gently and whispered in his ear, “Michael, you’re going to meet Jesus soon…we’re waiting with you, Michael. We will be here with you…it’s okay to go to Heaven now. I’ll be all right…the Lord will take care of me, and you and I will be together again soon. I’m waiting here with you, my dear husband. I love you. I love you. Thank you for being so good to me for thirty-three years. I love you.”

And I would whisper words of praise to the Lord in Michael’s ear. Praising God was like Michael’s second language — he always had a song of praise or words to extol his Savior on his lips. I wanted the last words he would hear on this earth to be words of love from a deeply grateful wife, and words of praise to the One he had loved and served, and was getting ready to meet.

When Sharon got up at midnight to look after her dad, he was still with us. But we knew it wouldn’t be much longer…

Saturday, February 7, 2015

April 24, 2015 | My Jottings

To say, “When we woke up on Saturday morning” would not be the most accurate way to begin this post. I don’t think we actually slept much Friday night after Michael was brought home. Sharon and I were in my king-sized bed and Sara was camped out on the floor nearby, and Carolyn had gone home with baby Miriam the night before and would be returning this morning.

Michael’s breathing had grown more labored during the night and when we weren’t up and turning him, changing him, giving him meds and keeping his mouth moistened, whispering our love to him and trying to reposition him to keep him as comfortable as possible, we were laying in bed in the dark hours, listening to him breathe and feeling the enormity of what was happening.

I was so thankful that Michael wasn’t in pain. A day or two after the diagnosis of ischemic stroke had been given, our son-in-law Jeremy shared something with me that was more evidence of God’s mercies for Michael and us, his family. Jeremy is a nurse, and a couple of the seasoned nurses he works with told him that a massive ischemic stroke is known in the medical profession as “the velvet hammer.” It is said to be one of the most merciful deaths a person can experience, because unconsciousness comes quickly, and the very few people who have recovered from large ischemic strokes have said there was no pain. You close your eyes, and slowly fade away. A merciful death for a merciful man, I have thought countless times since then.

I knew the hospice nurse would be visiting on Saturday morning and I was quite anxious for her to arrive, since I was overwhelmed with how to keep the sheets beneath him smooth and how to do all his cares. It seemed like each time we changed him, the draw sheet would rumple underneath him and I can’t explain how inefficient I felt I was being, and I wanted her to show me how everything was done. The hospital nurse had shown me once, but I was having a hard time remembering all the steps. I wanted with all my heart to make Michael’s last days at home the most comfortable, tender and loving possible, and while I never voiced it, I felt I was already failing him in some way. I had failed him with my inability to keep him home for the entire duration of his Parkinson’s and dementia, now I wondered if I was letting him down again.

The gracious, encouraging, knowledgeable, caring hospice nurse arrived around 9:00 a.m. and what a help she was! Stephanie assessed Michael right away, then took a thorough look around the room, checking our supplies, giving me tips for how to do some things I’d been perplexed about, and telling us how impressed she was with how we were doing. That made me relax a little. She commented on how beautiful and bright the room was, the obvious love and care of Michael’s family, and she said we were doing “above and beyond,” and that she could feel the love and peace in the room, which truly surprised me.

When Stephanie observed Michael as we changed him, she looked straight into my eyes across his bed and said in a low voice that she thought it would be “a day or two.” I later asked her how she could tell, and she said she had seen some momentary grayness in his hands and lips when we turned him to the side. I hadn’t seen that at all, and it made me trust Stephanie’s years of experience, and it made me almost sob. After she pre-measured all of Michael’s oral syringes for us and set them where our makeshift pharmacy was arranged on our bedroom dresser, Stephanie asked to speak privately with me, Sharon, Carolyn and Sara. (Buffy and Daphne had spent the night with Michael’s sister Patty at her house up the north shore and would be arriving a little later.) We sat in the living room for over an hour and she told us what to expect, how to watch for certain things, little tips on how to better care for Michael. She was so quietly encouraging to all of us. She told us that when death finally came, we could keep him at home as long as we wanted, and not to feel any rush to call the funeral home. She told us it’s very common for a family to hold vigil at the deathbed of a loved one for days, and for the person to die when the people leave the room for three minutes to go to the bathroom. I didn’t want that to happen. I wanted to be with Michael when he died. Stephanie also gave us a hospice journal and told us to write down the times we turned Michael and on which side, the times and amounts of medication we gave him, when he was changed, etc. She said all these things would be hard to keep track of unless they were written down, and she was so right. We kept the journal on the dresser and each of us made entries in it as the hours passed.

Stephanie told us that she or another hospice nurse would come back on Monday. When she left I noticed a light sleety rain and a thin film of ice forming on the surfaces outside.

All day Saturday we were blessed with the visits of friends and family. Food and love poured into our house and I can’t even begin to say what a lavish gift this was. If I ever thought that taking a simple meal to a friend in need was just a trifle, I don’t think that now. I didn’t have to make a meal for days, and when 4:00 p.m. would roll around and I’d begin to think, “What shall I fix for dinner?” and then it would hit me that I didn’t have to fix dinner, the tears of gratitude would come. Friends brought pots of savory beef stew, homemade breads and rolls with meat and cheese platters, mouth-watering chicken and wild rice soup, ingredients for breakfast omelets, cookies, turkey and pasta casserole, salads, pies, and more.

Our friends were also so sensitive and respectful and made their visits fairly short. Michael was a well-loved man and people wanted to say good bye to him. I completely understood this, and I was grateful for it too. So while we had a steady stream of visitors, everyone seemed to intuitively know to keep their time in our room fairly brief. I never once felt intruded upon or overwhelmed by the friends and family who came to quietly pray or to just give us their hugs and tears. The older I get the more introverted I feel, but during the last week of Michael’s life I desperately needed the support of my peeps and it was right there.

There might even be people reading this who came to visit, who brought food, who sent cards and money, and to you all once again I say a humble and deeply heartfelt thank you. Such burden bearers. You made such a difference in our lives!

Michael was born in 1949, the first child of an agnostic father and a devoutly Catholic mother. His parents were truly great people. His mama had him baptized as an infant in the Catholic church, but he’d been only halfhearted in any of the normal church things a Catholic child is expected to take part in for his spiritual formation. When Michael was almost sixteen and ready to get his driver’s license, his mother lovingly coerced him to go through confirmation classes in exchange for driving privileges, and he agreed. Unfortunately for his mom, though, Michael never truly embraced Catholicism. Many years later when he dramatically became a Christian at age thirty and had difficulty restraining his zeal, I think his mom was torn. She was glad he had dedicated his life to Jesus, but probably saddened because he did not want to be Catholic. When the CAT scan results revealed that Michael’s stroke was massive and would soon take his life, his only sibling Patty asked me if he could have Last Rites performed by a priest. She knew it would have meant so much to his mom (who died along with his dad in a terrible car accident in 1997), and it would be reassuring to her as well. I happily agreed to this ceremony because I love Michael’s sister Patty so much. I wanted her to be blessed, and if having a priest come to pray at Michael’s bedside would help, I didn’t want to hesitate. It was agreed that we would schedule the priest’s visit for the weekend when Michael was brought home.

So, right around the dinner hour on Saturday evening, Sharon and Chris’s parish priest, Father Graham, arrived. In spite of our bedroom having at least ten people in it, Father Graham remarked right away how noticeable the sense of peace was. He looked at Michael quietly for a while and said, “Oh, he is at peace.” I believed he knew what he was talking about and meant it, since as a priest he had probably attended more death beds than he could remember. He had possibly seen some death beds that weren’t so full of peace. Father Graham asked us all to draw close to Michael, and as we surrounded the bed he anointed Michael’s forehead and wrists with oil, then read a beautiful prayer asking God to have mercy on his servant Michael and to take him home soon. He then invited all the grandchildren present to lay their hands on Grandpa as he prayed, and we all prayed The Lord’s Prayer together. It was a short ceremony and so touching, with the little children there praying for their grandfather. We thanked Father Graham, and I’ll never forget the last thing he confidently said before he left: “This is the grace of a happy death!” We grabbed onto that phrase “the grace of a happy death” and have spoken of it many times since.

And I absolutely believe there can be such a thing as a happy death, even though death is full of sorrow and often pain. To me, a happy death is when a person has trusted Christ for their salvation, and knows where they are going when they stop living on this earth. And a happy death is when that same person is so loved and cherished that his friends and family can’t bear the thought of a day without him, and they shower him with affection, grateful tears, songs and prayers as he is getting ready to leave them. And a happy death (in Michael’s case) was one relatively free of terrible physical suffering. I know not everyone gets to experience that one.

As it was getting close to bed time, my daughters and I sat around Michael’s bed and sang together. We might very well have sung a hundred songs on Saturday and Sunday. We sang songs from their growing up years in church (“The Horse and the Rider,” “The Old Rugged Cross,” “Majesty,” “Jesus, Name Above All Names”) and we pulled up songs and lyrics on our phones to help us sing along with the ones we didn’t fully know. We sang hymns and choruses. One daughter would start, and then when we recognized the song she was singing, the rest of us would join her. We sang God’s faithfulness and love and beauty and mercy out over Michael, into the air around us, and up to God’s throne. We cried as we sang. We laughed at some of the old memories the songs brought. We trusted that even though Michael was completely unresponsive now, he was still hearing us and being blessed. He had been a loud, unashamed and exuberant worshiper since he made the decision to follow Christ, and it seemed so right to worship together as a family around his bed.

I hesitate to speak this next sentence since it sounds self-focused, but by late Saturday night I was exhausted in every possible way. I kept silently praying that God would help us, help Michael, and give us strength and joy as we walked through this agonizing but beautiful part of his life, our lives. So when our son-in-law Jeremy showed up at our house at 11:30 p.m., after he had just worked an eight hour shift as a nurse at the hospital, I was taken aback. He told Sharon, Sara and me that he would be taking care of Michael through the night and that we were to get some sleep. Such costly mercies were being poured out on us! Jeremy set up a chair in the corner of our bedroom by the head of Michael’s bed, kept one small candle going all night, and Sharon, Sara and I tried to sleep. We did sleep off and on, at least better than we had on Friday night.

Every 90 minutes or so, Jeremy quietly tended to Michael’s needs. I heard him gently but expertly turning him, massaging lotion on his skin, giving him his meds. At one point after midnight Michael moaned deeply as Jeremy was turning him, and I heard Jeremy whisper, “There’s that voice I love…I’m here Michael. I’m with you. I love you,” and I could hardly bear it when Jeremy quietly wept as he bent over his father-in-law to care for him, showing his love in the most perfect way possible.

Around 3:00 a.m. I laid awake and listened to Michael’s breath become so labored. I wondered if he would live past Sunday. In the candle-lit dark I said to Sharon, “Are you awake?” and she was. Sara was sleeping, not very deeply I’m sure, on a pallet of blankets on the floor near the bed. Sharon and I laid together for a while and then I felt her take my right hand under the covers, and begin to massage it. Our family members (including my mom and dad) have always loved a good massage and have practically fallen unconscious each time someone rubs our necks or feet or hands. Sharon rubbed my hand and forearm and it was so lovely I almost cried. After a while she reached up to my jaw and slowly found the spots in the muscles that were tight from stress, and she gently massaged my jaw for the longest time too. After over 30 minutes of this gift, she patted my hand and whispered, “I love you Mama.” I’m always searching for words as I attempt to share some of the details of Michael’s journey to heaven, and here again, I can’t find any that really convey what Saturday night was like. As we laid in bed and listened to the beauty of Jeremy caring for Michael as he made his way down his final earthly path, as Sharon so tenderly blessed her exhausted mama with such a practical, loving gesture, I was struck by something, and I spoke of it to Sharon. “Can you feel it, Sharon?” I quietly asked. “Can you feel the kindness hovering over us right now?” She responded that she could, and of course she could, because it was almost palpable. There in the dark it blanketed us, and I said, “It’s the huge kindness of God, hovering over us all right now.”

And I was in awe. We were being covered with a comfort, a loving kindness, the weighty, glorious presence of our Heavenly Father. When our friends Steve and Diane had left to return home the day before, Diane assured me that what was happening in our home was very precious in God’s sight, and that He would be focusing all His attention on us in this room as He was calling Michael home. And since we know God lives outside of time, it is entirely possible for Him to do that with His children. Do you think God is too busy attending to all the needs of this groaning world to listen to your feeble prayers? Not so. He has all the time in the world for each one of us, because He is not constrained by time and place as we are.

I will never forget the wonder of Saturday night, when Jeremy selflessly stayed up all night to care for Michael so Sharon and I could rest. I will never forget God’s love through Sharon, and each of my children during this time. Try as I have here with much verbosity, there just aren’t words.

And Edith and Mildred were experiencing all of this in their own doggy ways. No one will ever convince me that they didn’t perceive that their daddy was getting ready to leave them.

FphotoAll day Saturday, except for the times we let them outside and gave them their meals, Edith and Millie stayed close to Michael.

Edith held her vigil under Michael’s hospital bed. She’s thirteen now and is becoming a little arthritic, so she doesn’t jump up on furniture as easily as she used to.

And Millie, who is still spry and gazelle-like at age nine, jumped up on Michael’s bed many times, carefully sniffing him and discerning what was happening. sphotoShe often curled up as close to her master as possible, with her expressive ears back and down, as if she sensed how little time for such snuggling was left.

Friends, family, food, tears, laughter, singing, worshiping, hope, exhaustion, anticipation, sorrow, unity, comfort, kindness, love, gratitude, vigilance, awe, devotion and peace.

These wondrous gifts and more filled up the last Saturday of Michael’s life. And made us so acutely and thankfully aware of what it’s like when God bestows on His undeserving children the grace of a happy death.

As the sun came up on Sunday morning, we all thought, this might be the day…

Friday, February 6, 2015

April 14, 2015 | My Jottings

Monday through Wednesday I had hoped and prayed that Michael would wake up and come back to me. Thursday’s CAT scan results closed a dark curtain over that hope, and changed my prayers. And early Friday morning I couldn’t believe that I was making breakfast, letting the dogs out, getting dressed, and brushing my teeth, after hearing the news that Michael was very close to leaving this earth and going to heaven. It’s odd to do normal, mundane things after receiving news that makes one feel like life can never, ever be normal again.

I knew from what Dr. McKee had explained that the massive stroke would continue to cause progressive tissue death in Michael’s brain, taking him further and further away from us and ultimately shutting down all the systems of his body. As I drove to the hospital on Friday morning, I knew now not to expect to see improvement, but I sobbed out the most fervent prayer anyway. I cried out to the Lord to give me one final connection with Michael before He took him home. I prayed that God would let Michael respond to me in some personal, obvious way, so that I could know without a doubt that it was real and not just a reflex.

(And may I just insert here that I believe God still heals people today? I believe Jesus is the great physician and I know He can do anything — He can make the blind to see, the deaf to hear and the lame to walk. He can raise the dead! He holds this universe together! My acceptance of Michael’s illness and subsequent journey toward heaven were not because I didn’t believe God could heal him. Over the years I’m pretty certain he was prayed for hundreds of times. He believed God could heal him. We have dear friends who had great faith that Michael would be healed. Our pastor anointed him with oil weekly for many months, and we prayed with faith that Parkinson’s would be healed in the mighty name of Jesus. He even flew with friends once to a healing conference and felt the strong presence of God there. So why wasn’t Michael healed of PD and Lewy Body Dementia? I don’t know. I will trust God with that.

Some would say that God’s will was thwarted and Michael should have walked in the healing that Christ died to give us. I’m not sure how to answer that, except to say that every single person on this earth will die someday, and most of them will die from some kind of illness. God does take His people home, and He often uses an illness or tragedy to do it. When it became apparent that Michael’s health was rapidly failing these last two years, I still prayed out loud for him often. I prayed that Jesus would heal him from the top of his head to the soles of his feet, and Michael would whisper, “Amen, amen” as I prayed and the tears fell. But…I have known about families who have lost loved ones too early, and some of them weren’t able to enjoy the blessedness of a good and peaceful death because they refused to believe that their loved one’s passing could be God’s will. [Psalm 116:15 — “Precious in the sight of the LORD is the death of His saints.”] So I believe in a healing God, and also in a sovereign Father who can be trusted when His answer is no.)

Just like I had for the past three days, I arrived at the hospital so anxious to see my Michael. I had my iPhone in my right hand, ready to take a picture because I knew there weren’t many days left to do that. With each step down the hallway toward his room, my prayer was, “Lord, please let him respond to me, please….one more time…one more time….” When I got to his bedside he seemed to be so deeply unconscious, because his jaw was open so much more than on Thursday. I bent down, rubbed his chest a little and greeted him, “Michael…I’m here. It’s me, Julie. I love you Michael! I love you, love you, love you…”

And will you just take a moment to try to imagine what joy and wonder I felt when my husband roused a bit, slowly moved his head back and forth, and did this:

IMG_1783Yes.

He smiled.

He couldn’t open his eyes and of course couldn’t speak, but for about twenty seconds Michael moved his head and grinned at me like this, while I kissed his face and tried not to let him hear me sob.

I am still thanking God for this gift. An answered prayer.

I know I’m biased, but I think this is one of the most beautiful pictures I have ever seen.

The rest of the day was filled with dear people coming in and out of Michael’s room, either friends or family who learned the news that Michael would be meeting Jesus soon, or hospital and hospice staff, doing all the things needed to bring Michael home. Two of our dearests, Steve and Diane, drove three hours to come and be with us.

I received many texts and emails on Friday as the news traveled. I honestly treasured them all, but I think the one that touched me the most was an email from my friend Sue P. She wrote:

Hi Julie…..Please excuse my words if they appear clumsy for it is so hard to put into print how the heart aches. Dave and I are in prayer for all of you. My mind keeps going back to Michael as a true worshiper. Soon he will be free of the body encasing his spirit. I had a vivid picture in the early morning hours today of two very large angels on both sides of his bed, sitting at the ready to usher him home. Oh, the glory that awaits him on the other side of the thin veil that separates us from heaven. I love you my dear friend. Take courage today. xxooo Sue

Even now the thought of powerful angelic escorts waiting to take Michael to meet and worship His Savior makes me cry. Oh, the things we cannot yet see!

I met with the hospice nurse in the early afternoon and she had much to explain to me. She gave me instructions and some liquid morphine, liquid Ativan, oral syringes, and a compassionate hug. Since Michael was not exhibiting any discomfort at all I wondered about the morphine. She explained that as he neared death his breathing would most likely become labored and the morphine was to help with that. The Ativan was in case he became restless.

I was a little surprised to learn that hospice would only come to visit two times per week. I think my perception of hospice was that they were more present to do a lot of care taking. Maybe that’s the way it is elsewhere. I didn’t need to worry about that, though, because my family encircled me and for the next couple of momentous days I never had to care for Michael all by myself. My daughters each took time off from their jobs and all but moved in with us…such a blessing I will never forget.

Next, the hospital social worker came in to tell us that he was having difficulty securing a medical transport to bring Michael home. Apparently when the available companies learned we have semi-steep stairs without railings leading up to our front door, they became unwilling to move him. Too much of a risk. The social worker told me that our only remaining option was to call a Gold Cross Ambulance for transport, and he apologetically told me the cost would be $1200. I immediately responded, “Okay!” and knew this significant amount was something I wasn’t to be concerned about. My singular goal was to get Michael home quickly, safely and comfortably, and I suppose if the cost had been $5000 I would have said okay to that too.

The hospice folks had made the speedy arrangements to have a hospital bed delivered to our home, and I was called on my cell phone with the news that it would be delivered within the hour. Sara left the hospital right away to let the delivery people in, and to set things up in our bedroom for Michael. (Have you ever seen our bedroom and how spacious it is? If not, click here and you’ll be able to see.) She texted me a picture of what she had done, and it was beautiful. The hospital bed was placed close to my side of our king-sized bed, and Sara had made it, fluffed pillows, put a pretty comforter on the bed, gathered chairs all around the area, put flowers on a nightstand nearby, and made everything lovely and welcoming. Somehow I knew that even if Michael never opened his eyes to see he was home in his own bedroom, he would know that he was in a room of love, surrounded by people who adored him, and that this would be the sacred place from which he would depart this earth.

Right before the two ambulance attendants arrived at St. Luke’s, one of Michael’s neurology nurses gave me a quick demonstration on how to turn him every two hours and prop pillows up under him to prevent skin breakdown. She showed me how to make sure there was a “draw sheet” under him at all times, completely wrinkle free to protect his skin, and how to keep his mouth moist and his briefs changed. Plus about fifty other things. She reminded me to keep the hospital bed at 45 degrees for his breathing comfort, and I learned later what she meant by that.

The sun was beginning to set and it was finally, finally time. I drove home several minutes before the ambulance arrived. A light snow was falling. I knew the angels my friend Sue had envisioned were guarding Michael and would grace our home while we waited for the end to come.

The two ambulance attendants quickly assessed our home. There are two ways in: up the outside front steps which I mentioned before, and through the garage and into the basement, then up our basement steps which go up one way to a landing, then turn sharply before coming up through a door into our kitchen. They decided to back the ambulance up to the garage and bring Michael in that way, but they told me they were concerned enough to call for assistance.

photoeOur city’s fire department was summoned, and four firemen helped the two ambulance gals carry Michael very slowly up the stairs in a sort of body sling, like a heavy vinyl sleeping bag with handles.

They surely must have been informed that this man they were carrying was coming home to die, because all six of them were extremely quiet, very measured and deliberate in their movements, and so respectful. (I took this photo from our bedroom window when I heard the fire truck arrive, and Sara ran down to move our car out of the driveway.)

photobThey made it up the basement stairs, went slowly through our kitchen, the dining room, down the hall past the office and laundry room, and into our bedroom, where they gently placed my treasure on the waiting hospital bed.

I didn’t know then that a few weeks later the Gold Cross Ambulance bill I received would not be $1200, but only $197. Our wonderful friends Pete and Ginny had been in the hospital room when the social worker originally informed me about the considerable cost, and had decided between the two of them that they would bless us by paying for a huge part of Michael’s transport home. To say I was humbled and stunned when I received their generous check in the mail is an understatement. In the end, a smaller check covered it, but Ginny and Pete’s gift to us is one of the countless memories of God’s loving care through His people I will always carry with me.

Sharon brought her stuff over and informed me she was staying, and I was so thankful. It didn’t take long for us all to learn how challenging it is to care for every physical need of a 185-pound person who is dying. Just to turn Michael every two hours and prop three pillows behind him took a minimum of two people.

By the time we went to bed that night, Michael’s breathing had become loud and labored, and he looked like a man very close to slipping away. We took turns all through the night, turning him, changing him, moistening the inside and outside of his mouth, giving him liquid morphine to ease his breathing, whispering our love to him, and trying to take in all that we were feeling. This was tragic. This was holy. This was impossible. This was inevitable. This was a privilege. This was glorious. This was God’s mercy. This was wondrous.

And this was heartbreaking.

Even our little Schnauzers, Edith and Mildred, acted like they knew something solemn and momentous was happening to their daddy. Both were very subdued and stayed close to Michael’s bed the whole time he was home. Animals know things.

And so, with the unseen angelic guard I believe was in that room, and with the comforting presence of the Holy Spirit nearer than our breath, our vigil began.

Thursday, February 5, 2015

April 6, 2015 | My Jottings

(This is going to be a long post.)

Almost three whole days had passed since Michael had a small seizure and lapsed into unconsciousness, and I wondered what this day, Thursday, would bring. I knew he would be given another CAT scan sometime during the morning, and I was anxious to see what, if anything, would be revealed. The first CAT scan had been clear, why wouldn’t this one be?

When I arrived in Michael’s room in the neurology wing on the fourth floor of the hospital, his sister Patty was already there, and his two oldest daughters Buffy and Daphne, truly stellar young women who have taught me a lot about love, had driven up from their homes and families in southern Minnesota the night before.

Michael had been wheeled to the CAT scan place early and was just being returned to his room when I arrived. His face looked more gaunt than the day before, partially because the only nourishment he was receiving was IV fluids, and also (we later learned) because of what was slowly happening in his brain. His jaw was much more relaxed and the clenching activity in his left hand had settled and eased a bit.

We did what we had done for days now — talked to him, rubbed him, said encouraging things, sat with long periods of silence, put tiny sips of water in his mouth by spoon and watched carefully for him to swallow. Thursday morning I could tell it was taking him a lot longer to swallow even 1/4 a teaspoon of water. He could no longer return my kiss, and he seemed to be more deeply unconscious than before. I asked one of the nurses who came in every hour to care for him if this was considered a coma, and it took a few seconds for her to consider and then answer, “Well, not quite. He’s more stuporous, I’d say.” I looked it up and could see the difference between the two, but I can’t say it was encouraging to hear the term.

As I mentioned in an earlier post, Michael’s neurologist did his rounds at night, so when another physician came in around 11:00 a.m. to tell us he had the results of that morning’s CAT scan, I was relieved we could know then and not have to wait until after dinner time…but I did brace myself.

Dr. Evans quietly said that he did not have good news for us, and that the results of the scan clearly revealed that Michael had had a massive, ischemic stroke, affecting the entire left hemisphere of his brain. So yes, he had experienced a seizure on Monday morning while baking a cake with Josh at the veterans home, but the seizure was because something catastrophic had just happened in his brain, and a seizure with Todd’s Paralysis was not what was going on.

The doctor very soberly told us why this stroke hadn’t shown up on Monday night when the first CAT scan was done after Michael was brought to the ER. Maybe some of you know this already, but for those that don’t, I’m going to share what we learned.

Hemorrhagic strokes are the kind when someone has a bleed in their brain. These kinds of strokes are often very painful, accompanied by what’s sometimes called a “thunderclap headache” due to the sudden, almost unbearable pressure from the bleeding under the skull, and they always show up on a CAT scan.

Ischemic strokes are different — they are caused by a piece of plaque breaking off, usually from the carotid artery in the neck, and this bit of plaque flows in the bloodstream up toward the head and causes a blockage, stopping crucial blood supply to the brain. The result is dramatic, just as we saw in Michael because he could no longer respond to us, and over the next few days, brain tissue slowly dies. An ischemic stroke does not show up on a CAT scan right away because there’s been no hemorrhagic bleed. But after a few days, a CAT scan will reveal an ischemic stroke because the affected brain tissue is now shadowed, looking slightly darker than the healthy brain tissue.

And, mercifully, an ischemic stroke is painless.

After I took a moment to let this all sink in, I asked Dr. Evans if there was any chance at all that Michael could recover from this stroke. He put his head down a little, and shook his head no.

I thanked Dr. Evans for forthrightly answering my questions, he expressed his condolences for the news he’d had to deliver, and he told us that Dr. McKee would be speaking with us that evening, giving us more information about what to expect. When the doctor left the room I took one look at Patty and burst into tears. I sat down in a chair, put my face in my hands, and cried wracking sobs as quietly as I could. Patty cried too.

Barring the most spectacular miracle we could imagine, this was it. Michael was not going to make it.

There’s nothing I can say to describe how that forceful blow to my heart, mind and soul felt. I could reach for a Thesaurus and employ words like despairing and nightmarish, yet they only pale when compared to the realization that I was soon going to have to watch the light of my life go out. I still don’t know any words that adequately convey that kind of almost-paralyzing grief. And yet, I knew in my heart that Parkinson’s Disease and the more recent cruelty of Lewy Body Dementia was nothing Michael would want to return to. In the dark of night I had cried out to God many times to release Michael from the prison his body had become. I believed this was God’s severe mercy for my beloved.

The next thing I did was blow my nose, pick up my cell phone and walk out of Michael’s room, down the hall to a solarium/family waiting room with a view of Lake Superior, and I sat down on a couch and called my daughters, one by one. I don’t remember all the details of what I told them because I think a grey fog of grief had already begun to settle over me, but I let them know what the CAT scan revealed, and that their daddy was going to die soon.

Within twenty minutes our son-in-law Chris was there with us, because of course Sharon had called him, sobbing, the second she and I had gotten off the phone. He immediately took the week off from work and said he would be there with us, and if I needed one thing or a hundred, he would do whatever I asked. Over the next hour, daughters and grandchildren, sons-in-law and friends streamed in, bringing their hugs, tears and prayers. Some of our daughters had asked for prayer for Michael through their Facebook accounts, and now a lot of people knew what had really happened to Michael, and also what was soon to come.

Two old friends, Chuck and Sally, called to ask if they could come and visit, and of course we were so happy when they arrived Thursday evening with a Bible and the strong presence of the Holy Spirit all about them. Michael had been unresponsive all day, and we knew officially why that was now. Chuck stood close to the head of Michael’s bed and greeted him with a firm, loving touch, and said, “Michael, I’m going to read some scripture to you,” as he opened to Psalm 91.

The crowded, yet quiet room listened as Chuck read aloud, “He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, ‘My refuge and my fortress, my God, in whom I trust.'”

Chuck only got this far into the chapter when something exquisitely beautiful and breathtaking took place. Michael, who was completely unresponsive and whose brain was dying minute by minute, lifted his chin, opened his mouth and wailed, tears streaming out of his eyes and down the sides of his face, sob after sob escaping from his mouth. We were all struck by what was happening, and we knew Michael was responding to the scripture he had revered and read, loved and sang, countless times since he decided to follow Christ when he was 30 years old.

After this deep wave of emotion had washed over Michael, Chuck finished reading the Psalm out loud, and Michael continued to demonstrate all that evening that he could hear and understand what was being said all around him. The only way he could respond was with sobbing so plaintive and pure I felt like taking my shoes off or even putting my face straight down on the floor, it felt so sacred. He couldn’t talk, open his eyes, do anything on command, but when he heard the conversation turn to his Savior Jesus, he cried. When the name of a dear friend was mentioned by someone in the back of the room, Michael heard that name and wailed again. Before Chuck and Sally left, Chuck leaned down over Michael and said, “Michael, look how much your family loves you.” And his face contorted and his lips pulled back away from those beautiful teeth and the tears streamed….and even though some would have said it was an “ugly cry,” it was beautiful. Absolutely full of beauty. We were almost speechless from the impact of witnessing something so precious. We were experiencing something we knew we’d never want to forget. We all knew that Michael’s spirit was alive and well even as his body was rapidly failing, and he was responding to the things he knew were most important in all of life: Jesus, God’s Word, and the people he loved.

For several hours, we were given the gift of seeing that beauty come forth intermittently when Michael actually smiled at something funny Sharon said to him, when other family members and friends recalled aloud special memories, and he would gasp and cry, tears streaming.

I wanted to stay as late into the night as possible so I could be with Michael, and be there when Dr. McKee made his rounds, but I finally gave up and went home around 7:00 p.m. Friends had come by to provide a nice dinner to our Fosters, to tend to our dogs, and I had much to do and consider. I must have just missed Dr. McKee at St. Luke’s because he called me at home around 7:30 to tell me he had read the CAT scan and it was even more dire than Dr. Evans had reported. I guess a neurologist sees more in a brain scan than a regular physician, and Dr. McKee all but told me that the damage to Michael’s brain had put him in a near-vegetative state.

I asked the doctor how long someone usually lived with this kind of ischemic stroke, and he answered, “Well, the textbooks say four to five days, and I have seen a few people live up to eight or nine days. But the average is about a week.” I quickly did the math in my head and felt my heart race a bit when I figured that Michael was getting close to the fourth day. I knew I had to bring him home. I told Dr. McKee, and he gently encouraged me to move him to hospice in the hospital, inferring that it would be much easier on me, but I wanted Michael in his own house once more. Dr. McKee said that he would put in the order for hospice home care right away, and he felt hopeful that everything could be arranged for Michael to come home the next day, Friday.

When I went to bed that night, even in my utter exhaustion and sorrow I felt a sense of urgency, and also a strange sense of being untethered, all mixed together. I thought of the passage in 2 Corinthians which I had read to Michael many times in the past year, and knew these words were for us now, more than ever:

6157108771_6b26f94792Therefore we do not despair, but even if our physical body is wearing away, our inner person is being renewed day by day. 

For our momentary, light suffering is producing for us an eternal weight of glory far beyond all comparison because we are not looking at what can be seen but at what cannot be seen. For what can be seen is temporary, but what cannot be seen is eternal.

For we know that if our earthly house, the tent we live in, is dismantled, we have a building from God, a house not built by human hands, that is eternal in the heavens. For in this earthly house we groan, because we desire to put on our heavenly dwelling, if indeed, after we have put on our heavenly house, we will not be found naked. For we groan while we are in this tent, since we are weighed down, because we do not want to be unclothed, but clothed, so that what is mortal may be swallowed up by life.”   2 Corinthians 4:16 – 5:4, New English Translation.

My dear Michael was groaning with the burden of his earthly house. And what was mortal — his hard-working, made-of-flesh-and-blood, precious body, was getting ready to be swallowed up by life. Real, eternal life. Life with Christ.

A white robe. A loud voice with which to praise his God at the top of his lungs again. A new, glorious body that would never again know sickness. True freedom and joy. The magnificence of heaven. The face to face meeting with Jesus, whom he had loved and trusted for thirty-five years.

All this was just days away.

For Michael, I rejoiced. For myself and our family, I prayed that God would help us walk with courage through the door of grief we were approaching, and that we wouldn’t miss one single thing the Lord had planned for us.

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